The end-of-life experience in long-term care: five themes identified from focus groups with residents, family members, and staff

Abstract

Purpose: We designed this study to examine the end-of-life (EOL) experience in long-term care (LTC) based on input from key stakeholders.

Design and methods: The study consisted of 10 homogeneous focus groups drawn from a purposive sample of LTC residents (2 groups; total n = 11), family caregivers (2 groups; total n = 19), paraprofessional staff (3 groups; total n = 20), and licensed/registered staff (3 groups; total n = 15) from five nursing homes and eight residential care/assisted living communities in North Carolina. We analyzed data by using grounded theory techniques to elicit manifest and latent themes.

Results: Five overarching themes emerged: (a) components of a good death in LTC, (b) normalcy of dying in LTC, (c) the role of relationships in the provision and receipt of care, (d) hospice contributions to care at the EOL in LTC, and (e) stakeholder recommendations for enhancing EOL care in these settings. Underlying these themes was one central category, closeness, based on physical proximity and frequency of contact.

Implications: Findings suggest that promoting collaborative relationships among the four stakeholder groups, increasing social worker involvement, and removing barriers to hospice may enhance the EOL experience in LTC.